What PH-related lifestyle changes have affected you the most?

[Colleen]

Excellent topic, @cullen-steele .

Another example is when you were in grade school and we “tested” the hospital accross the street from your school to see how they would handle a minor situation. Not only were they overwhelmed with your IV Flolan but it was obvious they lacked knowledge about PH. We had a written letter signed by your PH doctor filed in the school office stating you were never to be sent to that hospital for any reason, and we specified where you were to go.

Thank God I worked for the parish office and could be there when your central line was pulled out at school because the medics were not going to respect our wishes. They were going to take you to the hospital accross the street and I had to advocate like crazy to convince them to take you where you needed to go.

Anyone else have experiences like this that you would like to share?

[cullen-steele]

Hi @Colleen-Steele , the experience you brought up is another great example. While on this topic I think another important topic or experience that many patients are likely to go through on a daily basis is how they prepare for their daily activities. For example, before I went anywhere whether it was school, shopping, to a friends house, or a trip it was essential that I made sure I had a back up supply of Flolan with me and whatever medication I needed to take while I was gone.

This extra preparation can be especially frustrating when I am in a rush as I can be scrambling to ensure that I have all the medication or emergency supplies that I may need throughout the day. While also ensuring that I have all my other necessities for the day as well.

[Colleen]

@cullen-steele good point! We always made your medication and medical supplies a priority to grab whenever you were going anywhere. Sometimes you would leave without”normal” necessities but those you could either “live” without or your loving mom would return home and grab them for you. 😆

[jen-cueva]

What an interesting topic and a great conversation starter, @cullen-steele !

Managing a condition like PH involves navigating numerous factors that impact our lifestyle, and vice versa. Like you, I’ve found that travel requires significant advance planning. Before any trip, I research hospitals with dedicated PH centers. If none are available, I identify the next best hospital in the area for potential emergencies. For longer trips, I also locate nearby pharmacies and arrange for any necessary medical supplies, like oxygen, to be delivered in advance.

As I reflect on this, I realize the biggest lifestyle change brought on by PH is the constant need for research and planning. This extends to every aspect of life, including diet, living arrangements, travel, and work.

Does anyone else have similar experiences or thoughts on this?

[cullen-steele]

@jen-cueva these are all excellent examples of things to do especially when looking at longer trips. I know I do the same when I am traveling the first thing that I consider or research is the distance between me and the nearest hospital and whether or not they will be able to properly treat me if there is an emergency. I also like your tip of having your medication sent to a nearby pharmacy before you arrive to not risk any delay upon arrival!

[jen-cueva]

Hey @cullen-steele , I believe we can all learn from each other’s experiences and discover how to offer better support. The sheer amount of preparation before a trip often leaves me feeling exhausted before I even depart. Can you or others relate?

[carol-volckmann]

So much to think about with a chronic disease like PH. @cullen-steele, @Colleen and @jen-cueva @jen-cueva plan ahead. Researching hospitals, PH centers, having your meds with you always and I also have a “go bag” in the car of what I might need to be more comfortable in the ER and hospital. The meds are always in their prescription bottles, extra remodulin at least 2 or 3 days worth.

I also found when we are away from home traveling and plan for overnight stays, I make sure they have cell service.

All that being said, I did find myself in the ER in Cottonwood AZ very small hospital. This was also “lock down” at the hospital because of covid. I was very lucky that I had the resident doctor who admitted she knew little about PH and said she would supply us with what ever we needed and would allow my husband to come help me do the changes and would let security know and he would have to come up to the room in a hazmat suit. She ordered Oxygen to be delivered to out motorhome at the camp site when I was discharged. The whole experience turned out to be very positive.

The only issue I still have at my own hospital PH Center is they want to order all my meds from their pharmacy. It is always a battle but I hold fast and have my own meds.

Sometimes it is just exhausting mentally to constantly advocate for yourself, but you just have to.

😐

[cullen-steele]

@carol-volckmann l I really like your suggestion of keeping a to go bag with you at all times. You never truly know when you are going to need even the simplest of supplies in a medical emergency. That being said, what kind of supplies do you keep packed in your to-go bag besides your medical supplies? Is there anything specific that you just can’t go without when you prepare for a hospital or extended stay away from home?

I also 100% agree with you regarding the importance of our own self advocacy regarding our medication and the pharmacy at hospital stays. I have time and time again had this battle at hospital stays that regardless of how many times I have been told to leave my medication at home and that I will not need it I bring it anyways. I find that it is always better to bring my own medication and not need it rather than not have it and have the pharmacy tell me I will be several hours late on my medication because they are slow preparing it or that the pharmacy at the hospital doesn’t have it at all for some reason.

[carol-volckmann]

Hi Cullen, I tried to log on and answer your questions but my posts never went thru, so … I will try again.

Hospital stays as you know are pretty uncomfortable. I try and bring in my to-go bag which stays in the car – a small comfy hospital gown, charges for my devices, my kindle, slippers, bath-robe, toiletries, moisturizer, a list of my meds even though I have them in their org bottles, copy of my Directive for my doctor’s and copy of power of attorney. Having all this along with extra medica supplies and changes makes it all easier- we don’t have to stop and think what I may need, it is all ready in the car ready to go.

Anything that makes our lives just a little bit easier makes a huge difference for ourselves and our caregivers 🙂

[Colleen]

@carol-volckmann we know all about the To-Go Bags. I made sure Cullen and I always had one in the car, packed with necessities and some comforting items that help make hospital stays more comfortable.

How are you and Dick doing?

[carol-volckmann]

@cullen-steele Hi Colleen, dose not surprise me at all that the Go-Bag you fixed for Cullen had all the essentials plus comfy items to make stays in the hospital just a wee bit more comfortable.

Thank you for asking, Dick’s balance issues are not getting any better and he does need to walk with his walking stick . Frustrating, but he keeps moving and has a good attitude (most of the time).

I am a bit of downer and very sad. My very dear sister was just diagnosed with 4th stage Pancreatic Cancer. I have given her as much info on this new oral med for 4th stage etc. It is really tough as two of her children (both in their 50’s) are taking care of her but are so dysfunctional it makes each day really rough and there is nothing I can do for her. I just try and be there for her with phone calls and happy and silly memories.

My health is a bit worse but I think the stress has added to that. Thank you for reaching out. Love and Light ❤️